The ball is in his court....(My visit to John's Hopkins!)

This is how we felt after our day!

This is how we felt just before seeing the doctors on the first day!

Dr. Sack, my personal 'Dr. House'.. on the 2nd day!

On Tuesday, Uncle Mickey and I road tripped down to Baltimore, Maryland to see a top "complicated medical problems' doctor/researcher who made an appointment for me to see a specialized Gastroenterologist as well while I was down there. The plan was that they would review and discuss with me the specialized CT scan of my abdomen with a special small bowel enterography, that I had up here in New Jersey, to define whether or not I have a true Mal-absorption problem causing my complicated and rare deficiencies. When we got to Baltimore and had our first appointment with the GI (Gastroenterologist) coincidentally the man graduated high school at Livingston High school with my mother! (Class of 1965!) How 'small-world' is that!? The doctor although amazed with my complicated medical history and my review of systems that we discussed... he needed more information to make a diagnosis or speculation as to what might be my problems. When he was reviewing the specialized CT scan that I had just had done, it was brought to our attention that the radiologist (who shall remain nameless) read the scan incompletely and forgot to write about the "small bowel enterography" part.. the entire reason I had the test!! We left the GI doctor and headed upstairs to see Dr. Sack who I was to see directly afterwards and as we were walking out of the office the GI's secretary told me the secretary for Dr. Sack the "reason" we went down to John's Hopkins in the first place was on the phone. I guess Uncle Mickey got the hint to take the phone from me when I completely melted down in hallway yelling, "What do you mean the doctor left without seeing me!?!?!?!" It turns out that the secretary made a HUGE mistake and did not call to tell me that since the CT scan report was incomplete Dr. Sack did not have anything to offer me. Welllllllllllll, that just was not going to fly. Uncle Mickey (a doctor himself) took off 2 days of work, the emotional and nervous, anxiety (not to mention I am still in quit a bit of pain from my two recent major hand surgeries) and the 3 hour drive to see this man and he wasn't there!? Left? Just like that? Unacceptable!!

The next 2 hours , Uncle Mickey and I got into the car and drove from hotel to hotel, calling hotel after hotel looking for a place to stay for the night since we were told that Dr. Sack PROMISED to see me the next day (Wednesday).... we weren't very confident that was going to happen but decided to resign ourselves to believing they would not stand us up 2 days in a row. Finally, a Hyatt Regency on the Harbor had 2 rooms available and we grabbed them! (Due to a few conventions and the baseball game, most hotels had zero rooms available)

Thank goodness for Uncle Mickey.. he calmed me down, we relaxed for a few minutes in our rooms and then decided to make the best of a night...Uncle and Niece in Maryland. We went to a nice steak restaurant and I was so proud that Uncle Mickey was able to eat Fillet Mignon (for those of you who do not know.. Uncle Mickey recently had Lap Band surgery and is doing an amazing job! He also has a blog that some might find inspiring and helpful : http://michaelwasfat.blogspot.com/ if you would like to follow him!) After a relaxing dinner, we decided to walk around the Harbor. We saw hotels, boats, there was music and it was a really nice night out to just walk around, listen to the music, and have some bonding time! (Which I always love with Uncle Mickey)

The next day, we awoke and I was able to get us both a free Continental breakfast because when they know you are a "John's Hopkins Patient..." You get a Free breakfast which was nice and then we trekked over to see Dr. Sack. Nervously we awaited and after fighting some more with radiologists over the phone, we never did get the true reading of the CT scan but Dr. Sack agreed to see me anyway. Since Wednesday was not a clinic day for him, he had to rent space for the appointment in a Neurologist's office in a different area of the hospital. He spent over 2 hours with us, he has a great respect for me and could not believe how much I had been through since he last saw me. He was impressed with my comprehensive medical history when he questioned me and gave me the most thorough medical exam I have ever gotten from any medical doctor locally. Unfortunately, though, he needs more research, information, and time to determine any outcome for me. I left there feeling the same way I did 2 years ago, and although it was a good appointment and nice to talk to him and update him, I cannot get excited or hopeful until I see some movement from him. The ball is now in his court! He needs to produce answers for us... I just hope those answers come..and they are good.

After the appointment, Uncle Mickey drove the 3 hours home and again, I thank him publicly for his time, commitment to me, dedication, and advocacy. Really... without him none of this would be possible. I hope you know how valued you are in my life.. (and if you do not, go to my notes and re-read your poem..GIGGLE)

Last but NOT least...My poor 10 week old Nephew, Andrew, is having a real tough time. He has spent the last 3 weeks in the hospital due to (we are not sure what) but he's continuing to lose weight. After an NG tube, a brovaic port in his little chest and numerous tests a decision has been made to transfer him to CHOP (Children's Hospital of Philadelphia) tomorrow. After an MRA was done, there is reason to believe he may have some narrowing of his aorta and he needs an Angiogram to determine if this is true, the severity and the route to fix it. Prayers for this little guy and his family to get through. My sister Michele... unbelievably stayed all 3 weeks inpatient with Andrew and David and their 8 year old Sarah also there every step of the way. They are the strongest family I know and they will get through this.. We are all behind you guys...and LOVE you!!

To be continued...

Stacy

The surgerie.....s

I must apologize for the extended delay between entries however when you hear what has been going on the last month... You will better understand why it took me some time to type. I am using my iPad to update this blog because I am unable to type sufficiently on my laptop due to the immobility of my right hand and arm.

I must start by saying that you are all aware that a HUGE fear of mine before this hand surgery was the "team" that would follow me at the hospital. I wanted everyone to know that I was taken care of very well. My medical students ( hi to those "trolls and elves" who are reading this :) ), the Residents, and Attendings were all careful, attentive, extremely patient and nice with me. I was reassured when I was nervous and I was taken seriously. (If only my surgeon took me seriously... Well- I will get to that part in a bit).

I had successful CMC joint Arthroplasty. The pins were in place nicely, I was hospitalized for 6 days after the surgery to ensure no complications would arise. I am on high doses of blood thinners due to my clot disorder so a fine balance of blood thinners needed to be administered to make sure I did not bleed into my arm. Everything was on track and I left the hospital in a lot of pain (to be expected) but in good condition. I was discharged on a Sunday and I was to follow up with my surgeon the next day in his office. I just wanted to add a side note. For those of you who do not know me...I know my body VERY well! I have self diagnosed , DVTs, PEs, bleeding into joints, hands, and infections. I am rarely wrong...

When I saw my hand surgeon the next day...I knew something was not right. I had a lot of pressure building up in various places in my arm, significant bruising had started, but mostly the pain- it was intolerable. Yet when I presented to my surgeon, he said "I was fine... It is all normal, Stacy...do not worry" and I was resplinted and to go back in a week. During the week, I was progressively feeling worse. The pain was unmanageable so I called my hand surgeon's office Tuesday, Wednesday, Thursday, and Friday finally getting a call back from his sorry-to-say incompetent PA who told me he would discuss my concerns with my surgeon and someone would call me back. Well, by 8pm Friday night when I did not hear back from anyone, I decided to go to my local emergency room. (I had seen other doctors during the week...plastic knee surgeon, hematologist, regular knee surgeon) all of whom did not feel comfortable unwrapping this huge splint on my arm and told me to reach out to my hand surgeon! At the Emergency Room- immediately when they unwrapped my arm (I will spare you the pictures but I sure have a lot of them) I knew ut oh- I am going to need surgery to fix this. They rushed me into a Doppler ultrasound but when the tech said, "There is too much blood to see anything" my only thought was wondering if my Brother-in-Law, David, was going to be my ambulance driver.

Unfortunately, due to a case of the surgeon not listening to his patient...I had to have emergency surgery ... In the middle of the night (1:00am) for Compartment Syndrome. This is a very serious complication that if left untreated can lead to amputation. (Feel free too google it for a more comprehensive definition if you would like). After I was transferred back to the hospital that my surgeon operates out of at UMDNJ, and as I am being prepped faster than I have ever been prepped before for surgery.... My surgeon wheeled me into surgery telling me how I ruined a nice dinner at a restuarant he was at with his wife and how his secretary said she did not get my 5+ messages. Oh and he hoped I would not suffer any permanent damage in my arm..and then I was out.

7:45am, I was in my hospital room and was comforted by the familiar faces of my same medical students, residents....and attending doctors (The Trolls and Elves) who all felt so badly for me but I think they also had a new appreciation that my worrying about complications was not for nothing. ( right guys??). This new surgery left me with the most painful incision extending forearm side from the middle of my palm all the way down my arm to just above my elbow. There are 178 stitches. ( inside and outside combined) don't forget the 2 pins I still have in place from surgery #1. Due to my lack of Vitamin C Absorbtion (remember I have a port in my chest for daily IV infusions )... Healing this incision will be challenging for my body. I was hospialized for 10 days following the Compartment Syndrome surgery. During that hospitalization, it became July 1 which is the switching day for people who are in medical school and who are Resident doctors. I lost my most favorite medical students and residents who knew me, cared for me and understood the fragility of my situation. It was hard to have to re-teach new people about Stacy! And it definitely was a challenge the next few days until I was discharged.

To date: I have had 1 post- op visit and so far the surgeon is pleased. I am under poor pain control. It is debilitating. Usually when I have huge surgeries (such as the 3 knee replacements) I would go directly in-patient to Kessler Institute where pain is managed better acutely after surgery. This time, I came right home. It has been difficult to say the least. I remain in a splint that is non- removable and a sling 24 hours a day. I am still facing 8-12 weeks of a hard cast but I need all of the stitches out first ... This complication set me back about 1 month. I am facing a serious amount of Occupational Therapy to regain strength, mobility and function to be able to use my arm and hand again. I see my surgeon on Wednesday- I am praying everything is ok... I am so worried!

Hopefully the rest of this recovery will go smoothly. It is so upsetting that this could have been avoided had my surgeon just listened to me. I am praying for no permanent damage in the muscles, nerves, and tendons that were cut so emergently in the arm or hand...

On a different note, I will hopefully be going to Johns Hopkins to see Dr. Sack for a specialized CT scan next week. Perhaps there will be some answers to my extreme, unhealthy, weight loss , Vitamin malabsoption problem, and my general deteriorating condition. Someone has to have answers for me right??

As I end this blog...here is a quote that I recently heard..." If you are feeling blue, make it a bright blue..."

I am trying so hard not to give up....Good thing blue is my favorite color!

To be continued....
Stacy